The Alzheimer’s Disease Centers Program: updates

Nina Silverberg, Ph.DDirector, Alzheimer’s Disease Centers Program, NIAPresented at Directors Meeting, October 20, 2018, Atlanta, GA

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Using your phone by texting (without downloading app):1. Text UWNACC240 to 22333 to join survey2. You will receive a reply “You’ve joined UW NACC’s session (UWNACC240)3. Your phone number is private.4. Text your answers during the active survey question. Listen to the presenter.

ADC Meeting Structure

May 2019 Date change to Thursday/Friday, May 2 and 3

Spring Meetings AAN requests that we shift to Thursday/Friday if they’re helping us

book discounted space. We can accept or book our own space keeping Friday/Saturday

Virtual Site Visits Volunteers have not been forthcomingMay 2019 – BiomarkersOct 2019 – REC Junior Faculty Poster Session

Applications

No more P50 revision applications; focus on your new applicationNOT-AG-18-031

Submit Final – RPPR when you are a P50 transitioning to the new FOA in your final year.

We don’t know when the new FOA will be out.

Rec Table 1 – from ADC Progress Report Instruction

Table 1. _________ Summary Table of REC Trainees – Year XX

Last, First Name Level of Training Area of Research Progress

Adams, P. Post-Doctoral Episodic memory on decision making

Co-authored paper, poster presentation, experience in a number of labs

Modified Rec Table 1

Table 1. _________ Summary Table of REC Trainees – Year XXRPPR year

Last, First Name

Level of Training

Area of Research Progress track

2017 Adams, P. Post-doctoral Episodic memory on decision making

# of co-authored papers, # posters, training award, experience in multiple labs

2018

2019

2020

2021

Summary of REC trainees (2018)

ADCs (10)

REC Trainees

Junior faculty

PostdocResidents

PredocPhD, MD,

Under-graduates

PublicationsGrants

Range 5-60 3-12 1-15 6-26 4-18 3-20

Total 263 28 74 110 52 105

Mark your calendar for upcoming REC activities

Workshop for REC postdocs

March 13, 2019 Grant writing workshop 30 post-doctoral trainees Conjunction with ADRD

summit March 14-15, 2019 Bethesda, MD

REC Junior faculty

Oct 11, 2019

Presentation (5 min) Poster Sessions 30 Junior faculty Conjunction with Fall ADC

meeting, Oct 11-12, 2019 St. Louis, MO

Staff Updates

Dr. Cerise Elliott is now officially: Co-Director of the ADC Program!

Dr. Yuan Luo will be guiding the RECs

NEUROPATHOLOGY STEERING CMTE

NeurobioBank Tissue and Biospecimen Resource Locator - NACC Transmissibility meeting TDP43 Meeting DS Autopsy

Current Steering Committees

Elected Representation ADC Executive Committee – July NACC Steering Committee - July Administrators Steering Committee –

August/SeptemberClinical Core Steering Committee - January Neuropathology Core Steering Committee - JulyORE Core Steering Committee - July Data Core Steering Committee - July

Biomarker Steering Committee?REC Steering Committee?

Interest Groups

2017 – Listservs createdDisclosure Work GroupAfrican American RecruitmentLatinoImagingBiomarkers

UDS Workgroup update Survey completed Results compiled: looks like very few whole forms would

be eliminated. One that stuck out was biomarkersMet with group to review with Bud – pointed out that

many are already optional Next steps:

Other ways to evaluate utility/effectivenessShould any additional items be made optionalAre there gaps? Are we at the cutting edge, leading

the field?Control visits – annual?

FY2018 NACC Augmentations

Imaging Digital BiomarkersCSF study Down Syndrome FTD and DLB modules Affiliated Studies

Promote your studies and share them with researchers around the worldDoes your Center have a study that may be a resource for researchers outside your ADC? If so, NIA invites you to promote it on the NACC website.Just fill out a quick questionnaire, and NACC will post a brief description, along with your logo and a link to the study website.

GET THE QUESTIONNAIRE: naccmail@uw.edu

Attention, ADCs

Down Syndrome ABC-DS Alzheimer's Biomarkers Consortium

— Down Syndrome https://www.nia.nih.gov/research/abc-ds

https://www.nih.gov/include-project

Autopsy

DS module

DS Work Group

Research Centers Collaborative Network (RCCN)Goal: Catalyzing cross-disciplinary research across the NIA

Center ProgramsWebinar SeriesWorkshop: Achieving and Sustaining Behavior Change in Older

Adults, December 6-7th, 2018 in Bethesda, MD.10 travel awards RFA for Pilot Awards to foster inter-center program

collaborations will be issued in December on “Achieving and Sustaining Behavior Change in Older Adults.”

Workshop: May/June 2019 on Sex/gender differences in agingwww.rccn-aging.org @rccnaging

Dorothy Farrar-EdwardsHannah BlazelErin ChinNichelle CobbKen Croes

Jim LahCecelia ManzanaresFelicia Golstein

ADRC Study coordinatorsVolunteers

Christine SuverWoody McDuffyStockard SimonAmy TranJennifer HamannMeg DoerrJohn WilbanksLara Mangravite

eConsent Narrative Self-guided exploration

NIA GLOBAL UNIQUE IDENTIFIER (GUID)PORTAL

Progress to Date & Next Steps

■ Live NIA GUID portal launched July 1 and rolled out to ADCs on July 17;

■ Portal allows users to:– create actual and

pseudo GUIDS; – Upload batch

information to generate multiple GUIDS

■ Account access and set-up is managed by NIA BRICS Operations Team

– 25 Users– 52 GUID entries

If you do not have all of the required information, you can create a pseudo GUID

Next Steps

ADOPTION OF PORTAL ACROSS NIA CLINICAL SITES (October 2019)

Roll out portal to all NIA Sites

CENTRALIZED NIA/NINDS PORTAL (December 2018)

Synchronize records of participants in NIA- and NINDS-funded clinical studies

LAUNCH NIA GUID PORTAL (July 2018)Initial Launch to ADCs Provide continuous user

feedback to developers

Office of Research and DevelopmentThree Strategic Priorities

Access to High Quality Clinical Trials

Increase Veterans’ access to clinical trials.

VA Data as a National ResourceIncrease the good that

VA Data can do.

Substantial Real-World ImpactIncrease the real-world impact of

VA research.

Greater choice for Veterans.

Modernizing our system.

Focus resources more efficiently.Focus resources more efficiently. Focus resources more efficiently.

Modernizing our system. Modernizing our system.

Access.

Lead: Grant Huang, MPH, PhD Lead: Amy Kilbourne, PhD, MPH Lead: Scott Duvall, PhD

Background

• Clinical trials are a key part of the national healthcare and research landscape.

• Trial sponsors include federal, non-profit and industry sources.– Industry trials have grown at the largest rate (17%) since 2006 (Ehrhardt, et al. JAMA, 2015)

• Clinical trials offer several opportunities:– Patient access to cutting edge therapies– Clinician access to research and collaborative activities – Mutually beneficial partnerships

• VA has strong clinical trials capabilities and resources– Much are internally focused and directed

Access to Clinical Trials Initiative

• Goals:– Establish an organized national capability for VA to partner in high quality clinical

trialso Efficient processes and capabilities for initiating clinical trials in VA health care

systemoModels for partnerships

– Provide more Veterans and investigators to opportunities to participate in industry and federally sponsored clinical trials on novel therapies

• Long-term: To advance VA’s role in the national clinical trials enterprise

Access to Clinical Trials (ACT) for Veterans

• Since April 2018 Summit, monthly updates continue to be provided to stakeholders (clinicaltrials@navref.org)

• 5 work groups established to address priorities for initiating trials:– Single point of contact model– Establishing set of key VA capabilities, assets and processes for industry partners interested in

initiating opportunities– Establishing set of requirements VA needs to fully consider opportunities– Creating and maintaining a process map for start-up activities– Developing VA Central IRB capabilities to accommodate industry-sponsored trials

NCI And VA Interagency Group to Accelerate Trials Enrollment (NAVIGATE)

• 12 sites selected for infrastructure support and to provide leadership for national network for NCI funded trials– 1 VA/CSP supported coordinating center

Collaboration between NCI and the VA to facilitate enrollment of Veterans into NCI funded clinical trials.

Opportunity for government agencies to partner at the national level to make clinical trials more accessible, and

Accelerate cancer research by testing new cancer therapies to lessen the burden of cancer and its symptoms, as well as novel approaches to the prevention and early detection of cancer